Are social networks essential to improving the quality of life of teenage patients? AboutKidsHealth.ca investigates

Social networks are an incredible resource for teenagers who are hospitalized for extended periods of time, says AboutKidsHealth.ca

Since its inception more than two decades ago, the Internet continues to influence the way people work, play, and access information. What started out as a medium for academics and military personnel to share research and classified information, the Internet has become an ubiquitous array of invisible networks, connecting people from all corners of the globe on home computers, iPads, and smartphones.

But with the advent of social networking sites, such as Facebook, MySpace, and Twitter, the Internet is changing the way people interact with each other. For some, social networks are a platform for idle chatter. But for others, like 14-year-old Liam Jefferson, these sites play a vital role in their daily lives.

In the summer of 2010, Jefferson was diagnosed with myelodysplasia, or preleukemia, an often chronic condition in which the bone marrow — the area of the body where red cells, white cells, and platelets develop — does not function properly. For the last six months, he has been in and out of The Hospital for Sick Children (SickKids) for treatment, including chemotherapy and a bone marrow transplant. With no other option than to stay at the hospital for days, and even weeks at a time, Jefferson began to feel isolated from the outside world.

“You’re kind of closed off from everyone and you can’t talk to anybody,” he says. “As a teenager you spend a lot of time reaching out and being social with everybody, and I think this is important because it really helps you figure out who you are and what you want to do later in life. That’s why I like Facebook … for the social aspect.”

At this point, access to the Internet, specifically social networks, is crucial to the quality of life of a teenage patient, especially those with a chronic condition.

“They are lifelines. They allow teenagers who are patients to not feel that disconnected and this is paramount for them,” says Deborah Berlin-Romalis, a clinical social worker at SickKids. “It’s their connection with that world, and it allows them to stay posted, post pictures, and give updates to friends and family because the phone is just not enough now.”

Berlin-Romalis, who works in both the Blood and Marrow Transplant (BMT) Program and the Paediatric Brain Tumour Program at SickKids, says living day-to-day in a hospital is tough for anyone, no matter how old they are. But for adolescents, who are ready to launch themselves into young adulthood, it can be especially challenging.

In a recent study conducted by the Pew Internet and American Life Project and the California HealthCare Foundation, researchers discovered that blogging and online health discussions are the two most popular activities people living with a chronic disease engage in while surfing the Web.

“These resources allow an internet user to dive deeply into a health topic, using the internet as a communications tool, not simply an information vending machine,” writes Susannah Fox, associate director of digital strategy at Pew and coauthor of the study. “Living with a chronic disease is also associated, once someone is online, with a greater likelihood to access user-generated health content such as blog posts, hospital reviews, doctor reviews, and podcasts.”

For Jefferson, scouring the Web for information about his condition wasn’t something he engaged in right away. “I remember in the beginning, when the doctors would ask me if I had any questions for them, I was pretty quiet because I just wanted [the procedure] done,” he says. “But once I got into researching my condition, I began to think about it more and more and from that I started to get more involved by asking a lot of questions.”

AboutKidsHealth.caAboutKidsHealth.ca is the leading Canadian online source for trusted child health information, and has a scope and scale that is unique in the world. Developed by SickKids Learning Institute in collaboration with over 300 paediatric health specialists, the site provides parents, children, and community health care providers with evidence-based information about everyday health and complex medical conditions, from second-hand smoke to chronic illnesses. AboutKidsHealth.ca adheres to rigorous quality standards for the creation and review of health information.